I'm reaching Breaking point! Is this the end?

My heart goes out to you. My husband died on the 17th June. Bowel cancer; initially diagnosed in May 2023. We knew from the start that the chemo would potentially, only buy a little extra time. And I did ask from the outset what kind of timeframe, as I couldn’t cope with not knowing. Obviously we all handle this in our own ways. 
You and your husband, hopefully, will see some positive results from his latest chemo.

I just wanted to say that you are not failing him. It’s clear from how you write that you are managing to cope with more than you could ever have dreamed possible. But please, look after yourself. I know that it’s easy to say. Please message me if you ever need to chat. This community has been and continues to be a lifeline to me. Hopefully you will find it helpful for you too. xx

Hi Clairejo.

my heart goes out to you too. I have been where you are and it’s a very lonely place.

do you have a palliative care nurse or a McMillan nurse who you can talk to.

Maybe ring your husbands GP and get them to send a community nurse out to you , they can assess your husband and get things in place if needed. I found the community nurse team to be the most helpful when I was where you are.

Take care of yourself , although I know how difficult this actually is.

xx

Daisy22 I want to send you love and strength and know what a lonely and confusing place you are in ! 

Clarejo80  Our ‘journey’!! has been similar and like you I feel helpless and don’t know what to do next! My husband sleeps for hours and can’t eat ‘proper’ food anymore ( only by tube) He has a CT scan next week and I know it will be more bad news as he seems to be ‘going backwards’ after his chemotherapy ( which seemed the only thing keeping him alive — but now like you I just don’t know how I can help him and it feels lonely and scary ( even though family and friends are v supportive. Sending love and strength! 

Thank you so much.

Hi Lou Lou

We don't have a palliative nurse but a number for his macmillan nurse. It sounds stupid but I feel that she is so busy and even though I know I can ring, I don't like burdening anyone.

I think I'll give his GP a ring tomorrow and see what I can get in place x

Hi Daisy

Sorry for your loss and huge hugs coming your way. Thank you so much for your kind words, I don't feel I am coping yet people around me seem to think I'm strong (it's a face I put on well).

I'm struggling with the not knowing but I was told that as he didn't want a timeframe, they wouldn't tell me in case I let it slip.

It's just the helplessness that I feel I should somehow be able to do more or ease his pain & suffering x

Hi Maddie

Sending Love and strength back your way.

We have reached a point now where they aren't even ordering CT scans for him. They did talk about peg feeding for a while but as it has also spread to his colon now, it's not an option. At the start he had a line direct into his vein to feed him as tube feeding wasn't an option due to where the obstruction is in his stomach. The bypass has held out longer than they predicted.

The problem I have is with him wanting to stay home and alienate all of his family members as he doesn't want them to see him this way. He can't see that they just want to spend time with him.

This last chemo has been the absolute worst so far and for how awful it has made him feel, not sure it's been worth it x

I honestly don’t think the McMillan nurse will see it as you burdening them. Please ring them if you don’t get any joy from your GP. 
I was the same as you , I didn’t like the idea of keeping bothering people but in the end I decided my husbands comfort etc was the most important thing and I made those phone calls.

good luck with the phone calls tomorrow and please let us know how you get on.

Take care xxx

Hi ClaireJo, I am truly sorry to hear what you and your husband are going through, and understand what an almost impossible situation you find yourself in, ClaireJo, I know your husband doesn't want to go in the hospice but you can still access their palliative care team  to help at home you can do this through your GP and I suggest you also ask for a referral for the district nurse, they have been wonderful for me and my eldest as we are both dealing with terminal cancer. Macmillan nurses are fab and want to help you, best wishes to you both.

Eddie xx